He's a New Man!

Back in May I finally decided that Cameron's hair was shaggy enough that I was going to have to break down and get it cut.  I wasn't avoiding it due to the fact that I'm a fan of the shag.  It was more due to the fact that I wasn't very optimistic about how it would go.  Our Parents-As-Teachers lady, Sandy (who is wonderful, by the way!), called her own hair dresser for me and discussed Cameron with her and asked if she'd be willing to attempt cutting his hair.  She does a lot of extended hours so we could go in the evening when no one else would be there, which I thought would be good.  She graciously said she would love to cut his hair!

So one Friday night while Grandma Lynn was here visiting, she and I took Cameron to get his hair cut while Cody stayed home with Owen.  We took milk, a snack, and a portable DVD player and I'm happy to report that Cameron hardly knew she was back there cutting on his hair.  He barely made a peep!  I didn't get any photos, however, because I was holding him in the chair.  Grandma got some with her camera though, so I'm hoping to see them soon!  But I do have some good before and after photos.

BEFORE:

AFTER:

 

Owen said, "Cameron is a new man!" 

He wouldn't stop long enough for me to get a good photo, so that's the best you get.  Unfortunately, it was only beginner's luck because I took him back a couple of weeks ago by myself, thinking it would be a breeze and it was not!  By the end of it, the hair dresser, myself, and Cameron were all sweating.  I think it's safe to say it was the longest 15 minutes of my life.  Or at least of that day. ;)  Thankfully, the hair dresser is one of the nicest people I have ever met and she was so understanding.  She doesn't even charge me what she normally charges because she said she thought I had enough stress in my life!  I've told Cody that he will be going to the next one.  I wouldn't want to deprive him of all the fun I'm having acting as a human straitjacket to what I think is the world's strongest 2-year-old.  That just wouldn't be fair, would it?

The Autism Roller Coaster

Well, we are almost 4 months to the day from Cameron's diagnosis.  The last 4 months have been such a roller coaster for me.  I can go from acceptance, to denial, to peaceful, to upset and depressed about all of this all in the same day.  I keep telling myself that he is alive and well and that is the most important part.  All the other stuff we can work with.  But then I see a child who is about his age bouncing around, talking, and interacting, and I can't help but go to the "if onlys" and "what ifs."

We are still doing therapy through Early Access.  Two women come twice a month to work with him.  It's very slow-going because he is very reluctant to do what you ask him to.  We also have a wonderful speech therapist who comes once a month.  Unfortunately, though, that is nowhere near enough.  So we have been working on getting him approved for a waiver through the state, which will help cover the cost for a lot more therapy.  He has occupational therapy and speech therapy evaluations at a place called Child Serve in early August.  I am really excited about that because this is a place that treats only children, so they are well-versed in kids with developmental disabilities.  We are also working toward getting him accepted into a program with The Homestead, where he would receive ABA (Applied Behavior Analysis) Therapy.  The Homestead offers both in-home therapy and on-site therapy.  We are just in the early stages of the application process so we are unsure as to which type we will end up going with.

I am just ready to get the ball rolling on all of this and see some results but, I must admit, the process is very difficult for me.  It is hard to be reminded everyday of the differences in your child and I am really struggling with it.  I have been practicing a lot of avoidance lately, which is partly to blame for the slow-moving wheels.  A future of unknowns is so difficult for me to face.  And teaching your child things that are supposed to come naturally to us as we grow is so frustrating, not only for me but for him as well.  It is all definitely a learning process as new sypmtoms emerge and we navigate these waters, which are oftentimes rough.

Two nights ago, Cameron woke up around 2 in the morning because he was having a difficult time breathing due to a cold.  He was screaming and crying and nothing we did would calm him.  We tried all of the normal tricks that usually help, but that night it just wasn't working.  After he screamed non-stop for nearly an hour, I decided I was just going to have to put him back in his crib and let him cry it out.  I turned to look at him as I walked out of his room and saw him put his belly over the crib rail and flip himself out of the crib.  He landed head first on the carpet, which resulted in more crying on both our parts.  I just stood there crying, praying for the strength to know what to do.

Cody came in to check on us because he heard it all on the monitor.  He tried to take Cam from me because I was crying but Cameron held on so tightly to me that Cody couldn't take him.  So I sat down in the rocker with him and we cried there together.  As I rocked him in my arms like I did when he was a baby, he fell asleep, clinging to me.  In that instance, my tears turned into happy tears.  He needed me.  Sometimes it feels as though I am just a vessle to getting him what he wants.  Like anyone else could do it for him as long as they do it correctly.  But that night I realized that not only does he know his mama, he wants me, too.  And he didn't want me to get him food or milk or turn on a movie for him.  He wanted me because he was scared.  He needed to be comforted and he needed it to be done by me.  And that felt pretty darn good.

It was also in that instance that I realized that not only does he need me to comfort him, but he also needs me to go to bat for him.  Cody and I are the two people he has in this world to count on to fight for him.  And that's exactly what we're going to do.  I just continue to pray everyday that God grants me the strength to do it.

2010 Walk Now for Autism Speaks

Right before we got Cameron's official diagnosis, I came across some info. regarding the Walk to benefit Autism Speaks in Iowa.  I knew that would be the perfect thing for me.  I needed to redirect all these feelings I was sorting through with Cameron being diagnosed into something positive.  Autism Speaks is the largest non-governmental supporter of autism research in the United States.  All the funds collected at the Walks across the country go directly to autism research.  Because of the huge role Autism Speaks has played in the last 10 years, we are so much closer to understanding this puzzling disorder than we ever have been before.  And I feel so honored to be a small part of this puzzle. 

So Cody and I got to work!  Cody handed out flyers at work, we sent up donation pages on the internet, we sent out a letter to family and friends asking them to donate, we asked Facebook friends to donate, we recruited family members to help us gather donations, I baked cookies and sold them at a garage sale, we used funds we made from selling our unwanted things at a garage sale, I baked a cake and Cody took it into work...we worked our tails off trying to get donations.  We are, after all, two very competitive people!  I am proud to say that our team, Cameron's Crusaders, ended up being the Top 3rd fundraising team for the Iowa walk, collecting $5,140 from all of our wonderful family and friends who graciously opened their pockets and gave so generously.  I was also honored on Walk day as a Grand Club member and for being the Top 3rd individual fundraiser for raising $2,565.  However, I was only honored because it was my name on the page.  Cody worked just as hard as I did to get that money!  We also collected an additional $1,060 in checks that we mailed in under Cody's walker ID.  Unfortunately, it didn't make it before Walk day so he wasn't able to join me on stage for the Grand Club announcement, even though he should have been!  And none of this even counts the many donations that will eventually be matched by various companies.  I have not counted that all up, but it is well over $1,000 and probaby closer to $2,000!  We are just amazed and humbled by all of the support we have received over the course of the last two months.  It has meant more to us that we could ever express.

So enough babbling!  I have lots of photos to share!

Our 2010 Cameron's Crusaders--The Balch Family, The Eisenbarth Family, The Knox Family, The Youngman Family, my parents, Cody's parents, and, of course, us!

This is the shirt that we wore.  I asked my friends, Eric and Jayne Balch (who own a t-shirt printing company in Omaha, Nebraska called Midwest Impressions) if they would be able to print shirts up for us.  They went above and beyond with this shirt and it is better than anything I could have ever imagined!  And not only did they design and print it, they donated half the cost of the shirts to us!  Eric's dad, Ron (my dad's boss) donated the other half!  We are so grateful to them for working so hard to get them to us and for joining us at the walk!

The Grand Club Members on stage

These photos are just to give you an idea of the amount of people there walking.  There was about 2500-3000 people there!

 

Our team walking!

Owen and Lizzie--he always manages to find an older lady! ;)

Owen and John Balch

Lizzie, Cameron (who was a little hot and didn't want to have his photo taken), and Grace

There were also bounce houses, slides, refreshments, and a sensory tent there!

 

Matt, Logan, and Jess

 

They had these baby pools all around with ice and bottles of water.  Our water baby found one and would not stop until he was in it!  Daddy took his shoes and socks off and he loved it!  It is amazing how much water calms our little guy.  He is drawn to it like a moth to a flame.

Mom and Dad pose in front of the Midwest Impressions van for Ron!

After the walk, most everyone came back to our house for lunch and just to hang out.  The adults sat around and talked and ate and played bags, while the kids enjoyed the Wii and the sprinkler!  There are no photos of the kids in the sprinkler because they kept squirting people and I was too afraid to go near them with my expensive new camera!

Andy and Cody

Matt, Ben, and Eric

Eric

 

Claire and Owen (sporting some borrowed goggles)

We really couldn't have asked for a more perfect day.  The weather was great and the company was even better.  We've already got plans in the works for how to make everything even better next year!  So come on out and join us--we guarantee a great time!  And thanks again to all who donated and walked.  We feel so blessed beyond measure.

Back in Business!

Hello, to The Five People Who Still Check This Blog!  Many people have been asking me if I'm done with the blogging world.  After such a long absence, I started to wonder myself.  I love blogging and the release it gives me.  It's almost therapuetic for me.  I also love the fact that I can record our life easily, as I'm not all that great in the journaling and scrapbooking departments.  However, lately, I just haven't felt the motiviation to do it.  I think it's a combination of a lot of things, really.  I've been trying to get things squared away with getting services for Cameron (more on that later), I've beeing working on Walk stuff (more on that, too!), and basically I've just had so much going on that I'm still trying to figure out how to balance it all.  I'm not really sure God knew what He was doing when he gave me a special needs child because I am horrible with time management!

I think another reason I haven't blogged is that, as I said before, I often use this blog as my release.  If I write it down, get it all out, I feel better about it.  I've been working through a lot of feelings since Cameron was diagnosed and I've written countless blog posts about it in my my head.  But then I never sit down and actually pound it out because I don't want this to become The Autism Blog.  Autism is a part of our life, but I can't let it consume us.  I still want this to be the place where we share about what's going on in our family.  And yes, that will obviously include stories of autism but I want to be sure I'm sharing other things as well.

So, since I'm already doing so much balancing in life, I decided that trying to balance the blog on top of it was just too much.  So I took a break!  But now I'm back and ready to share all the good, bad, and ugly with you again!  First up will be photos and info from our first Walk Now for Autism Speaks and then we'll take a little trip back and recap the couple of months I was away.  So for the few of you who are left, I hope you'll stick with us.  I think the next year for the Muhses is going to be an awesome one and I can't wait to share it all!

The Details

Well, if you know me well, you know I can't tell a story without all the details.  So hunker down for a long one, folks.

On Tuesday, March 30th, Cody and I traveled to Iowa City with Cameron in tow.  Owen stayed behind with Grandma Debbie, who came up during her Spring Break to help us.  We went to the Center for Disabilities and Development where Cameron was evaluated by a Psychologist, Speech Therapist, and a Developmental Pediatrican.  It was a long day as we were there from 9:45am til 4pm.  We went in there expecting an Autism diagnosis, so we felt that we were pretty well prepared for whatever they might throw at us.  We were wrong.

After examining Cameron and consulting with us for about 2 hours, the Psychologist told us that she had 2 diagnoses and neither of them were very good.  The first one was what we expected:  Autism.  But the second one...well, we just weren't at all prepared to hear it:  possible mental retardation.  Now, before I go any further I must say that I hate that term.  Therefore, from here on out you will hear me refer to it as many are now referring to it:  Intellectual Disability, or ID.  I was fully prepared to walk in there, get our autism diagnosis, be told what to do next, go out and do it, and recover my child from this monstrous disorder.  When I heard those words, my heart sank.  My hopes sank.  I had been reading about so many success stories of children who had been diagnosed so early that they were able to intervene and recover them.  Many show no signs of austism anymore, some are so high functioning on the spectrum that only they and their parents know they even have autism.  This is what I hoped would be our case.  This is what I'd prayed for in the last few months.  And now two words seemed to make it all come crashing down.

After we heard her diagnosis, we were sent off to lunch and told to come back at 1pm to meet with doctors.  We both walked out of there in a daze.  You could have knocked us over with feathers.  I cried as we pulled into the Hardees parking lot.  We went through all the motions of getting in, getting our food, and sitting down, both of us still stunned at what we'd just been told.  I couldn't talk about it very much due to the fact that Crying in the Middle of a Hardees was just not at the top of my Things I Must Experience Before I Die list.  But there was one thing we were both able to say, "How does a child who could recognize and name every letter of the alphabet and count to ten before he was 2 qualify as ID?"  It just didn't compute.

The second half of the day had us in more small rooms, waiting for more people to look at our child.  I kept thinking, "What more are they going to tell us?  What more could they have to say?"  We saw the speech therapist, who confirmed what the psychologist said.  Then he was weighed, had his blood pressure and temperature taken, his head measured, all while he screamed because he was tired of being there.  I wanted to scream right along with him. 

The last person we saw was the pediatrician.  We gave her an entire run-down of Cameron's health history from birth to now, all while Cameron ran around the room in nothing but his shirt and diaper.  By this point in the day, we could hardly see 2 feet in front of us, so it was difficult to absorb everything she was saying, as well as know what quesitons we should ask.  We did, however, ask the question on both of our minds at lunch.  The doctor explained to us that they are only seeing a snap-shot in time of Cameron.  Their diagnosis only takes into account what Cameron did at that particular time on that particular day.  They aren't looking at what he could do 6 months ago.  She explained that his autism might be clouding his ability to do many things, therefore it may seem like he has ID, but in fact he doesn't.  She also uttered the words that I have clung to since I walked out of that office, "Due to the fact that he was doing so many things as little as 4 months ago, I have very high hopes that with a year of intense therapy, he will get back everything he's lost."  He will get back everything he's lost.  I play these words over in my head at night when my thoughts take me to a future of unknowns, or during the day when I ask him to do something he once did with ease and now can no longer do, or when I see Owen trying so desperately to have some sort of meaningful interaction with his brother.  I cling to them as if they were worth millions of dollars.  I want so badly for him to be able to tell me again what sound a cat makes.  I'm mad at myself for not getting it on video when he was doing it because I'm afraid I might never hear it again.  I'm mad that these are now the things I'm wishing for.

But don't get me wrong.  While Tuesday was one of the hardest days of my life, as were the few days that followed it, I don't spend my entire day wallowing in self-pity.  (I usually reserve just a small portion of the day for that.)  I told myself on the 2nd day of feeling sorry for myself and for Cameron and the cards we've been dealt, that I can't concentrate on possibly having to take care of my adult son in 30 years.  I have to concentrate on taking care of my 2-year-old son now.  I have to remember the high hopes the doctor had for him and I have to keep my hopes up, too.  And if I can do that, I can make it through a day and things are ok.

So that's where we are right now.  I'm just trying to get through every day, just like any other Mom.  The last few days have been spent enjoying my kids, making lots of phone calls to figure out where we go from here, and trying to work in a little therapy with Cam.  I keep telling myself that he's still the exact same kid he was last week before we ever heard any of these words that were so difficult to hear.  He still smiles at me.  He still laughs, still gives me kisses, still runs to his Daddy when Daddy puts his arms out for him.  He's still our Cameron.  And he's pretty freakin' great.

Before I close, I'd just like to say thank you.  I've received countless phone messages, text messages, emails, and cards.  Messages telling me you're thinking of me, what a great Mother you think I am, what a great kid you think Cameron is, that you're praying for all of us, or even some who want to take our children and give us an evening out.  ALL of them are appreciated more than I could ever express.  Though I'm trying my best, they are coming in faster than I can respond to all of them!  So if you've called or written and haven't heard back from me, I promise I will get back to you soon! 

There really is so much more I could say but I'll save it all for another day.  For now, I'll just say stay tuned.  I know Cameron is going to amaze us all!

Pants Are Overrated

One morning I was doing a couple of things around the house while Cameron was playing the in the dining room.  I walked in to check on him and found him like this:

He had somehow gotten his pants and diaper off all by himself and just stopped to watch a little TV.  I'm not exactly sure at what age scratching your bare bottom and having your mother take photos of you and post them on the blog is no longer cute, but in my opinion, we're not there yet.  Don't worry, though, I promise not to post any photos of his father doing the same thing!

The Button

Cameron recently discovered the phone base on the desk in our kitchen.  He has become particularly fond of the "locater" button.  That would be the button that you press that lets out continuous loud beeps in case you have lost the handset.  The button that might have you asking, "Where is the fire?" if you weren't expecting to hear it.  Yes, that button is his favorite.

He was pressing this button off and on for a couple of days, despite my repeated, "No, no, no's."  In fact, I think there were even a couple of times he pressed the button, looked at me with a sly smile and said in a cute sing-song voice, "No, no, nooo."  As cute as it was, the incessant beeping was about to drive me batty, so I moved the base farther toward the middle of the desk, into the big bowl in which we throw our spare change, where he couldn't reach it.  Problem solved!

Later that night, I was in the living room and heard a noise in the kitchen.  I walked in to find this:

He had climbed up on the desk chair and found his beloved button.  Keep in mind that up until a few weeks ago, Cameron was not much of a climber.  Now I'm pretty sure he could win an Olympic medal in Climbing Dangerous Things in Order to Get Something Out of Reach That You Really Want.  That's a sport, isn't?  I think I heard it's being added to the Summer Olympics in 2012.

He sat there pressing The Button for a few minutes, as I just didn't have the heart to deny him that pleasure.

But apparently being on the chair just wasn't quite good enough for him.  He just really needed to be closer to The Button.

So he climbed on the desk, where he continued to press The Button.  At some point, though, all that climbing and button-pressing became just too much for him to handle.  So he had to take a little rest:

 

Being a toddler is such hard work!

Ice, Ice, Baby!

We normally get a few icicles on the house each winter.  But with this winter being the horror that it's been, we got icicles by the dozens and they hung around for months.  Cody finally had to knock them down a few weeks ago because they were so thick at the top that we were afraid they were going to pull the gutter off the house!  I made sure to snap a few quick photos of them before he destroyed them.  Even though they could have caused damage to the house, I still think they are so pretty!

We couldn't even walk in/out of the front door!

Look at how thick that ice is at the top!  They all kind of formed one sheet of ice at the top!

As beautiful as they are, I am happy to say that the 40 degree weather we are experiencing right now is doing it's best to melt them completely into oblivion.   Come on spring!

Monster Trucks and Nachos

A while ago (I think it was January but I'm not exactly sure), Cody and Owen went to see Monster Trucks with our good friends, Andy and Ben.  This is the second year they've gone and all the boys seem to enjoy going.  Owen loves it, though I'm pretty sure his favorite part is the concessions.  He takes after his mama in that respect.  My mom still talks about the times Dad would ask me if I wanted to go to different games with him and my brother.  I would quickly ask, "Is there going to be a concession stand?"  If Dad said no, I replied with, "I think I'll just stay home with Mom."  What can I say?  I like a good concession stand.

I'm getting off-topic here so I'll just get on with the photos.

The sound of the trucks is so loud that the boys have to wear noise-reducing headphones.  I'm slightly shocked that Owen has no problem leaving them on the entire time.

Nacho Heaven

Have you ever seen a cuter nacho face?

Thanks to Andy and Ben for a great afternoon!

Who's that big boy?!

Cameron actually still eats in a high chair at home, for a number of reasons that I won't bore you with.  So it's rare that I see him eating a meal at a table.  And I just can't get over what a big boy he looks like!  Now if we could just get him to use a fork....

The reason I gave up on professional family photos....

I was determined to get a photo of our entire family over the holidays.  Full family photos are a rarity for us for a number of reasons.  Mainly because we rarely have anyone to take a photo of us, as well as the fact that let's face it, I'm a stay-at-home mom.  Putting on nice clothes during the day, only to have them stained with any sort of gunk you can imagine, as well as putting on make-up that no one will see...we'll let's just say it seems like a big fat waste of time to me.  I'm sure Oprah would disagree with me, but when Oprah has two kids running around screaming, mounds of laundry to do, and dishes piling up, then she can tell me if the first thing she wants to do is put on a little make-up "just so she can feel good about herself."  I love Oprah but that woman does not live in the real world.  But I digress...

So I knew that Christmas day would be my best bet.  Everyone would be dressed nicely (and yes, a nice new Bears t-shirt un-faded and free of stains is considered "dressed nicely" around here) and we'd have someone to make the kids do their thing as well as someone to capture this wonderful moment on camera.  And wonderful it would be!  I would frame the photo and comment to everyone who walked in my door, "Look!  Look how wonderful my family looks in this photo!  We are dressed!  We're smiling!"  Ok, maybe I wouldn't do that.  But I'd have something that proves that yes, we are a family of four and we are actually in the same place at the same time a lot of the time.

Oh, but wait.  The kids would both have to smile...

Well, that one won't work.  Let's try it again.

Ok, well we got one smiling.  But they're supposed to smile and look at the camera.  Take three...

Apparently there is some law that prevents two children from smiling at the same time for a photo.  I wish I had known about said law before I attempted this.  I am also fairly certain that they think a laser beam might burn their retinas if they look at the camera.  Oh well, let's give it another shot anyway...

Well, one is smiling and looking at the camera and one isn't crying so this will have to do.  Although, I'm fairly certain that for at least the next year, Cameron's stomach is going to show in nearly every photo we attempt with him due to the fact that you have to hang on to him for dear life lest he dart away.   At least we now have proof that we are, indeed, a family of four who spends major holidays together, even if it did take 15 painstaking minutes of my life.  See you on the next major holiday!

All Aboard the Youngman Express!

Uncle Jay is well aware of the many train enthusiasts in our family.  So, not only did he make sure he had a train looping their Christmas tree, he also took some time to set up their old train set in their basement.  Cade and Owen were in heaven!  We didn't bother taking the little boys down there, as we thought it might be a little too much for them at their age.  Here's a peek at our big boys enjoying the action.

I just love the look on their faces in the photos as they watched the train race by them.  Cade would say, "All aboard!!!"

One of our bigger boys thought he might get in on the conducting action in an effort to impress his wife.  I'm pretty sure all it did was confirm to her what a big dork he is.  That's what it did for me, anyway. ;)

A big thank you to Uncle jay for taking the time to create something so special for the boys!  I know my boy certainly loved it and can't wait to come back and play some more!